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Friday, October 30, 2015

It started out like a typical Friday. Fridays are met with a bundle of fatigue from the harried pace of the week and a hope that maybe a calm weekend is in store. I mostly like Fridays.

I finished cleaning my first house at 11am. I was headed to my second house, and as I past the donut shop, I had the thought that I should stop and take a dozen donuts to the couple whose house I was headed to clean next but, I was running a little behind and I didn't want them to think I was not showing up, so I decided I would make a donut run after I cleaned their home.

You see, I have been cleaning for them the past 4 years. In those 4 years, I have become very attached to them. I always looked forward to spending an hour or two with them. They are so very generous, good humored and completely loving. I loved hearing the husband talk about the chickens he loved so much who roamed in the back yard. Each week, he would share a dozen eggs with me. I never left their house empty handed. They were always sharing something with me; little gifts for the kids, even though they lived on a meager income themselves.

My kids loved being with these people as much as I did. Often, the boys would go up on the weekend and help them with yard work, moving things into the shed for the winter, just a little bit here and there. Recently, shortly after Spencer got home from his mission, the wife was having a very hard time and I called the kids to come up, mostly so the boys could do a couple heavy things she needed done, and just to help cheer her up. Shelbie brought her lunch and visited with her while I cleaned, the boys did the hard work and Spencer gave her a sweet blessing.

I love these people!

Today, as I walked in the back door from the kitchen, It was quiet. I called out to my friend so I wouldn't startle her. As I headed back to the bedrooms, she met me at the hall and informed me that her husband had just taken his last breath. I held her and she sobbed on my shoulder. I couldn't even believe it! He had passed away less than a minute before I arrived!

I felt blessed to be able to help her clean up. He had had a difficult couple of days with pneumonia, his lungs had filled up with blood so there was a bit of a mess but I didn't mind. It was the most sacred cleaning job I have done. It didn't take long for her kids and grandkids to arrived. I ushered them in, and quietly cleaned the rest of the house, changed beds and got things ready for her kids coming in from out of town. I tended to the dogs and gathered up all of the medical equipment and took it out to the shed. I threw out the oxygen tubes, and helped the nurse finish her job. It was sad but I had to be brave. For all the family coming in, the undertakers, the Bishop, I was just the cleaning lady. No one but the wife really understands the connection I had with this man.

This was the 12th person I was there for as they passed away. I'm not sure why I have been given this task. I've always been in this role...Someday, I will understand this.

It was interesting to hear his step grandkids say goodbye. Their tears were filled with love and appreciation to this gentle man who loved everyone. It was touching for me to be a part of that.

In contrast, his own daughter arrived. From what I understand, they have not been close. My heart broke even more to hear that the first words out of her mouth were regret. What a painful moment.

Last week when I was there, he was having a rough time with pain. Before I left, I stood by his bed, held his hand and I asked him if a donut would make him feel better? He loved donuts. I was the donut girl to him. I made sure he always had a little treat, his favorite maple bars. I said to him, "I think what you need to feel better is a maple bar!" His eyes lit up and the biggest smile came across his face, "That's exactly what I need Kathy!! I love you so much!!" he said.

The next day, I took him the promised donuts and he was overjoyed. He sat up in bed and I helped him eat his donuts and drink his Ensure. He hugged me and I told him how much I loved him and he told me how much he enjoyed the treat. I left last Saturday feeling so blessed.

Though it's so hard to say goodbye to these people I get so attached to, it is a blessing and I am reminded with each friend that passes what a sacred, holy moment death is.

Wednesday, October 28, 2015

I've been seeing this quote around a lot lately...
"Suffering Is Optional"
Is it? Is it really?

In a lot of ways, I feel like the last three months have been an extended lesson in suffering and that is so frustrating. One would think that after all we have been through, survived, overcome, battled; a little weight loss and breathing problems wouldn't be the proverbial straw.

It hit me, as I have pondered on this notion, that God doesn't just give us the same old problem twice. His plan is never under revision or sending us back to try again, he wants us moving forward, growing, expanding. I don't see God as some high strung school teacher, with an arsenal of punishments if we don't do our problems right the first time. Everything God does, builds upon the thing before, including trials.

So, even though it feels like the trials with Spencer are nothing new and look an awful lot like other problems from the past, there must be something different to learn. It's probably okay that some days are harder to face than others but with the hard days, I can't help but dwell on how I fail myself, my kids, my God. I can't help but think I know better, my faith is stronger, my hope brighter so why the struggle?

If suffering is optional, I guess you need to know what suffering is so you can make an informed choice if you want to suffer or not. Suffering, as Buddha defines it nothing more than attachment. Attached to what you think something should be. When life turns out to be something different, even painful...it's hard to accept it...so we suffer as we try to make sense of the difference and find words to fit the feelings we weren't expecting.

Clearly, I have been attached to what I wanted life to be. I thought that post mission life would be filled with a continuation of a spiritual high but in reality, we have been bogged down in suffering, in poor health, in grief; this overwhelming sadness for what is and what we had hoped it would be.

Part of the angst that goes along with this whole premise is that the very phrase, suffering is optional, sounds so easy! It doesn't sound any harder than deciding between a shot of Novocaine at the dentist for your filling or not! It's a no brainer but when it comes to the option of suffering or not...it isn't something you decide once and you're done. It's a decision you make each minute, each hour, each and every part of the day in the world of dyskertosis congenita.

I guess if I was being totally honest, I'm still having a hard time adjusting to the fact that we even have this wretched disease after all...I'm still grappling with words to describe the feelings that come day after day, all the ways this disease has changed us; left us vulnerable. Exhausted.

But, at the end of the day...I think I am understanding more about suffering and choosing at least to be open to something different than suffering. In all of this, I am learning about my Savior too; that he took upon himself our pains, afflictions AND suffering...I guess we forget that suffering is part of this mortal journey, the riot and rift between our physical experience and spiritual experience. I can see that there is much to be learned in this moment regardless of my choice to suffer...or not.

Monday, October 26, 2015

I will soon be going into my second year on the affordable health care exchange and I'm really not happy about that. Today reminded me just how crummy this system is and why I left the Utah clinics a couple of decades ago.

I don't think I have mentioned this but Spencer had an accident three weeks ago and messed up his shoulder. His arm just droops out of the shoulder joint. He waited a week to tell me. It took another two weeks to get an appointment to see a doctor and today was suppose to be his appointment.

He got time off work which is virtually impossible to do. They aren't too happy with him but I'm not sure what else they expect. He works full time, has no benefits and his hours are 7:00am til 7:00pm. What else is a person to do when they literally have no time to get sick?

He got to his appointment and they had somehow neglected to put him on the books...they wouldn't even try to fit him in even though it was their mistake. To say Spencer was upset would be a gross understatement. He has been in pain for three weeks, felt bad asking for time off from work, took the time, had his pay deducted and no appointment. With his permission, I called to see if we could get something rescheduled for this week.

They were so rude. She went rambling on about the problem with their office taking Blue Shield and Blue Cross. After her rant, I calmly said, "Well, he doesn't have either of those insurances."
"Well, it says right here he does." She replied.
"Well, he doesn't." I gave her the correct information and she said, "Well, I don't know about that insurance. I don't know if we even take that. You are going to have to find out."

"Can you transfer me to your billing office, I'm sure they would be able to tell me what insurance plans you accept?" I asked.

"No. I can't do that. It is your job to find that out."

Oh. My. Gosh...

I spent all afternoon trying to find a doctor who could fit Spencer in. None of the Ortho docs I found, would let him be seen by anyone other than a PA before seeing the doctor. That whole process would take another two to three weeks because you have to see the PA, then schedule to see the doc, then schedule imaging, then schedule to go back to the doc for results...What a farce. And they call this affordable healthcare? NOW...they just paid for three separate visits...NO...I just paid for three separate visits!

The first woman I spoke to, who screwed up his appointment today, I asked if I could just send him to the ER and get the imaging done before the appointment to save time and she said, "Oh, hospitals aren't allowed to do imaging anymore in the ER. They will just set up an appointment for you to be seen by a doctor."

Are you joking me? Hospitals can't do imaging? Spencer's broken his back twice, his ribs once, his ankle once a his arm a few times and all of those times, prior to Obamacare, the ER took appropriate imaging and diagnosed the problem...then sent us to the surgeon.

It's been quite the eventful day not to mention weekend. We found out yesterday that Spencer has Arsenic in his blood. Nice. As if the poor kid doesn't have enough problems in life right now. Nothing is working out for us. It's getting to be so incredibly frustrating.

Enough...is...enough. Affordable healthcare is anything but! Maybe for the people who get a cold every now and again it's great but not when you have such complicated, far reaching problems.

Saturday, October 24, 2015

I use to care if my kid started kindergarten fully expressing algebraic expressions, finding x's and divided 'y's, easily reading a Harry Potter book in an afternoon and well, the alphabet? Ya they had learned that years before Kindergarten was on their little radars.

Okay...so maybe not. I wished for kids like that. I had high hopes for them, fully intending that someday, they would be all that and in the AP honor classes, ready to start college in 9th grade.

I use to get frustrated when they came home with B's and not A's. I use to care that while my friend's kids were busy going over flash cards, monitored activities to learn new skills, dance class, little league, karate, basketball, gymnastics and playing a 5th of Beethoven; we were not doing that, exactly. We were nursing fevers, checking out a new room at the hospital, doctor hopping...but boy did I try to be 'that' mother. That perfect mother we all secretly hate because we feel so inadequate.

So, I began thinking that I was just some lousy mother. I was a perfectionist. At least I tried. We acted perfect, we looked perfect, everything was suppose to be perfect.

Then...I got divorced and there went perfect. And then the kids got sicker and sicker and there went perfect.

There went the supervised homework sessions, the extra-curricular activities, and I could have cared less if they practiced the piano so eventually I said, "Let's not play the piano anymore...whatdoyasay?" In that moment, I got a Mother of the Year award from them!

My less than perfect mothering skills have always bothered me some. But today, was parent teacher conference. For the first time, as I stood there waiting in line and watching parents chew out their poor kid for a lousy 'B', I thought...thank goodness I didn't get what I wished for!

When our reality became chronic and the future of my kid's life, uncertain, I discovered what was important. It's not school. It's not a grade. It's not how well they can write a paper on the 2nd Amendment or explain the workings of Islam. It's not about starting kindergarten with a working knowledge of the English language or a head start on chapter books. Life really has nothing to do with school at all.

Life has everything to do with learning though...learning to love, learning to live, learning to be, learning to explore, learning to be kind, helpful, resourceful, learning what matters most, never to stop learning. That's different than A's and B's and algebra, and government and science and teachers who demand everything be handwritten so the kid can't "copy and paste and plagiarize from the Internet." (her exact quote from parent teacher conference today.)

Life is better since I started giving up my quest for perfection; when less than perfect is really quite satisfying because instead of drilling my kids with sums of numbers, I've learned to drill into their minds that they are loved and their worth is so much more than the letters in the alphabet the government requires to be meted out.

I always wanted to be one of those kinds of mothers...I might get there yet.

Wednesday, October 21, 2015

I think I have determined that it is the incongruity of our situation that makes it hard-ish at times.

One day, everyone is doing pretty good. Everyone is happy, content, satisfied...you can almost hear the hum of a life of ease in the distance of the day...and...I think to myself...things aren't so bad after-all. We can do this.

The next day, it all seems to fall apart. Everyone is sick with something, new symptoms crop up, there are more questions than answers...and...I think to myself...we are never going to survive this!

One day, Spencer is sending video clips of him with all the energy in the world, the next day...flat out, hardly able to breathe.

One day, Sam is enjoying life, no complaints, everything is great in his world, but the next day, his mouth is filled with sores...a horrible drop in white cells and neutropenia is setting in worse than ever.

One day, Shelbie is busy, working, happy, content and everything is great in her world and the next day, she is completely out of energy, sleeps for 12 hours during the day after getting 10 hours of sleep the night before.

And...I think to myself.

Remember, I've been prepared for this moment...dig deep. Reach. Stretch. There are angels here. it's all going to work out. Somehow. Someday. Maybe not this day...but some day.

Tomorrow is an IVIG day for Shelbie. How is that another month has come and gone? Spencer has developed the new symptom of vomiting at random times and random places with random food he has eaten. I'm not sure what to think of this. Getting a deep breath when he is trying to sleep is harder and harder than before. And because that isn't enough, he has injured his shoulder. It is drooping out of the socket as the doctor says...He meets with the surgeon on Monday. I'm betting the rotator cuff is torn.

Tuesday, October 20, 2015

It is a curious work that God does to prepare us for the adversities and lessons yet to come. One curious work builds upon the last.

In the moments when you stand apart from whatever is happening and view it from a perspective of eternal collections, it is really something to ponder.

Lately, God has been weaving death in and out of our day. This is not to say that anyone is dying, but when you spend an entire year in the grips of uncertainty, pressure building in the heart of your children, problems with diffusing oxygen and other malfunctions, the thought crosses your mind a time or two.

Even looking back on my life, it's as if the major theme God set on my path was learning about death. I have said goodbye to more dear friends than I can count. Many of those friends, I had the privilege of staying with up until the moment they passed into the great beyond. One such friend was Dana. I have written about her more than once. She was my best friend and passed away when I was just 18, of Cystic Fibrosis. Is there any question that staying with her for months and years on end in the hospital was a gift from Heaven? No. I learned so much about fibrosis of the lungs long before I was thinking about marriage or kids. Long before I had to draw upon that knowledge for my own kids. Hospitals became a comfortable place of laughter and connection because Dana made it that way. It was a moment of preparation for what life brought with the arrival of my kids.

Recently, I have felt her presence more and more in my life as I am left to figure out our own lung problems.

More recently, Spencer retold a story to us about something that happened to him. Out of the blue, a man at work called him into his office to tell him about his grandson. The story was completely irrelevant to anything going on that week. The man has a 12 year old grandson with an inoperable brain tumor. The doctors have done all they can. They set up hospice for the boy and sent him home. Over a couple of days, the boy expressed his fear of dying and asked what would happen to his body when he died.

The parents arranged to take the boy on a field trip to the mortuary, at the boy's request. He was shown the embalming process. He was able to choose his casket. Visit the cemetery and select his plot. All the mystery was shown him and he was at peace. He bore a sweet testimony to his parents about his love and trust in God.

That's it. That was the story. There was no back story, the boy is still alive. That was all the man wanted to tell Spencer. As Spencer relayed the story to us, we were moved to tears and touched by such courage and conviction. That little boy's story will someday be a story that will get us through some tough days.

Today, Shelbie was selected to be a photographer for the non-profit company, Now I Lay Me Down to Sleep. Photographers are selected by their local hospitals to be on call for when infants are still born or pass away shortly after birth. She has always wanted to do this. In fact, this was her main goal when she became a photographer. Now that it is becoming a reality, she is very scared to do her first shoot.

I think it will be the most incredible experience. I have been in the room for a stillborn birth and it was by far, the most sacred experience I have witnessed. I am excited for her to stand at the threshold of the veil, between this life and the next and feel the presence of Holy Angels and even Jesus Christ...carrying that baby spirit back home.

I hope I never forget these little lessons from Heaven. God does give good gifts. I know that I don't always receive the gifts with joy and celebration but I can see the worth in their weight. There is no better way to learn these things.

Monday, October 19, 2015

Tonight, for Family Home Evening, we went to a straw maze. I have never been to one before so it was an adventure for sure and it was a pretty popular place to be as I'm sure every one in town had the same idea.

It was harder than I thought it would be. I found it interesting as we followed each other along in the dark how many people I heard complaining about their experience.

Phrases like:
"This is dumb."
"I'm so tired of getting nowhere!"
"Can we just get out of here yet?"
"I hate being lost."
"Could this be any harder."
"This is my third time back, I know what I'm doing, follow me."

I just followed along, chuckling to myself. It's a maze! People knew they were buying tickets for a maze. I don't think I saw one person who was dragged there against their will and forced to play along. If you don't like the idea of running around, in the cold night air, feeling lost and tired, then why even come to such an activity?

Then I thought about how this could be a parable for life. How often have I heard my inside voice say, "This is dumb...I'm so tired of getting nowhere...Can we just be done already...I hate feeling lost...Could this be any harder...Okay, I've done this before, I know what I'm doing...(Only to be lost and confused again...)

It never occurred to me before tonight, that maybe the day would be more enjoyable if I just followed the path and tried to enjoy the adventure. I signed up for this, paid in full, jumped in line, raised my hand...whatever we did up there. I knew it was going to be hard and I would get lost and tired and feel dumb...but here we are! On an adventure like nothing I have ever experienced before!

The house hasn't been cleaned in, I'm afraid to think how long it's been.

I'm sure I won't have an electric bill this month because the majority of the lights are burnt out.

The windows in my house make every day look cloudy and overcast.

The dog is now refusing to go out to the backyard to do his thing because the grass is at least 6" above his head.

I could go on...but why? The point is, we may look like we have it all together, but we don't.
When I am not working my tail off, taking kids to the hospital or working my tail off...I sit down and try to figure out what the future is going to look like.

My car is almost 9 years old and expensive things are breaking down. I looked into buying a used car last week and the reality is, I can't afford even a $200 car payment. My house is 11 years old and I know the day is coming when the water heater will quit, the furnace will break, the fridge is on it's last leg and million other things are about to die. I heard today that the HOA where I live will be increasing dues which I already know is going to be more than I can afford and so, as I was duct taping the handle back on to the lawn mower, I wanted to scream!

It's frustrating to say the least. If I could just get a real job then all this would be much easier but I can't get a real job when someone is always sick and as it is, we are going to the hospital three times a week in a nearby city. So, instead, I piece together a living that from the outside probably seems not bad but self employment taxes make that impossible.

The struggle is real. There is so much more to just watching your kids deteriorate before your eyes. I worry so much about what is going to happen in the future as things get worse and I will have to limit my work even more.

At any rate, today I knew I had to stop everything to 'Sharpen the Saw' as Steven Covey says.

So, after cleaning two houses this morning, I cleaned my own. I didn't just clean it, I bleached the whole darn thing! I changed no less than 12 light bulbs. I took out the trash. I swathed the lawn in the backyard. I powerwashed all the cobwebs from the outside of the house. I pulled weeds. I bought some real food. I filed over three months of business things and household things. I de-junked a closet. I cleaned out the car...and then went to my night job.

And...I feel better. Tired. But better. At least order is restored and that is half the battle when so many of the days are the antithesis of order.

Saturday, October 10, 2015

Our trip to Utah this week was filled with family time. I felt re-energize to see the kids enjoying each other's company.

We arrived a little early and Spencer was still in class so we wandered around the college taking pictures and texting them to him so when class was out, he had to come and find us according to the pictures...it was amusing, a little family scavenger hunt.

We went for an early dinner during Spencer's break. When we came out, I wanted to get a nice picture of the kids. Well, when it comes to pictures, my kids are the worst! They will never be serious and all I get are dumb looks and ridiculous smiles. Shelbie wanted everyone to stand on these concrete pillars but she needed the boys to help her get up on one and they weren't having it.

I settled for this pose.

It's been a long time since we have spent any time at University of Utah Hospital. The last time we were there was about 16 years ago. Sam had his first bone marrow biopsy and they refused to put him to sleep for it. Shelbie had had one just before this that they refused to put her to sleep as well. It was horrible so with Sam, this was the last straw for me and the last time I stepped foot in this hospital. It was with mixed feelings I came back.

I love that even though these trips are stressful and difficult at best, the kids hang in there with each other and make the most of it. I love to see how they support each other and show extra kindness. The boys are so great with Shelbie. I told her at one point that she is one lucky girl to have such handsome, sweet brothers who take such good care of her. These kids are the best part of my life.

Thursday, October 8, 2015

This is a quote that is sandblasted in glass as you walk into the University Hospital at University of Utah. It struck me...in many ways.

My actions in life have always been for the good of my kids. Even before I had kids, the things I did, the people I met, the experiences I had, prepared me for this cause...taking care of my kids. Maybe all mothers feel this way, I don't know. But, without a doubt...I have been led to this point.

As I read this, I also had the overwhelming feeling that all I really want in life is results. Good results. Long lasting, happy results. I want results that will fix my kids, though, I know, that that has become water under the bridge. There is no fixing anymore. There is sustaining and supporting but that isn't the same as fixing. It's not giving up or giving in, it's just a shift in thinking.

We met with our new Cardiologist this week. We all really like him. He grew up in Canada, in the same place where I was born. He knows all of my relatives and I know some of his. I especially know two of his uncles who were twins. My grandma always talked about the Whitehead twins and what beautiful voices they had. I remember like it was yesterday, hearing them sing, "In the Hollow of Thy Hand" when I was much younger. I don't know where I was or what the occasion was but I can't believe I remember them. Their faces, their voices...and here we are so many, many years later their nephew is our new doctor!

He specializes in congenital heart defects but specifically, arteriorvenous malformations of the heart, lungs and liver. He is also a Bench Scientist so when he isn't seeing patients, he is doing ultrasound on fetal mice. He examines and studies their hearts and venous systems...on fetal mice...still in the womb!! It's an amazing thought!.

He was very patient and didn't appear to be overwhelmed with the complexity of our issues. We ended up having to stay an extra night because of further testing he wanted. Of course, there are no answers yet, it will take some time to gather all the information together, assess the results and then make a plan.

Something I really appreciated in him is seeing the need for a complete medical team, under one roof! I didn't realize how our scattered doctors left us at a huge disadvantage. He will be working on gathering those people.

The biggest concern at this point is definitely with Spencer and his continued weight loss, another pound off this week and his deteriorating lung capacity. In addition, Shelbie's heart and lung issues that continue to get worse. Sam is holding steady and that is awesome news. A relief really.

This morning, they all had to do a test called a 6 minute walk. Now, this doesn't sound very hard does it? No incline, no mph to gauge, just walk at your best pace for 6 minutes while wearing a heart and respiration monitor on your wrist.

It cut me to the core when my kids, my active, busy kids, could barely make it through 6 minutes. Sam did the best but his resting heart rate is 41, even lower than Lance Armstrong's resting heart rate. Within seconds, his heart rate shot up over 100. That is completely abnormal. It means his heart is stressed. Shelbie started at 75 for a resting heart rate and the same thing happened to her. They literally had a guy with an oxygen tank ready to revive Shelbie during the 6 minute test. After 90 seconds, she looked like she was going down! Spencer's resting heart rate is 105! Resting. Add a walk to that and he did just what Shelbie and Sam did.

This is what is puzzling the doctor. Structurally, the problems they have don't show these kinds of issues so what is it...what is making their hearts work so hard? Too hard.

Monday, October 5, 2015

Sunday evening, when the shadows were long and the sun was low in the sky, Sam and I headed to the park for a little fresh air and slack-lining. If you've never heard of the sport, it's a 2"wide webbing that you secure between two trees, about 6' off the ground and then walk across it and do tricks on it, like a tight rope. Yes, you read that right...do tricks.

Sam loves to slack-line. He is pretty darn good too! I love to watch him practice but I don't get the chance very often. Actually, I think Sam likes it so much because girls like to watch him. There was a never ending audience of young college girls and even a photographer who asked if she could take his picture. I can't say I complained much since the people who stopped to talk to Sam thought I was his friend...not his mom! ha ha.

Back to the story...

I decided I wanted to try to get up on that web so with Sam's help, I made it up. My legs shook and wobbled as I tried to walk across the length. My eyes were fixed on my feet. I must have looked like a small toddler just taking its first steps, legs weak and rubbery as they learn to maneuver across the room.

After a while, Sam said, "Mom, don't look at your feet. Look at the end of the rope where it is tied to the tree. If you focus ahead, you will have better balance and your legs will stop shaking so much. I didn't take my eyes off that tiny rope below but since Sam was beside me, with a steady arm to hold, I looked up.

Sure enough, my legs stopped wobbling and I was able to walk the length forward and backward without any trouble at all!

I said, "Sam! You are so smart! This is just like life you know?"
"Ya, I know mom. If you just focus on your problems, you are going to lose your balance and it's going to be hard to get through them. If you focus on the bigger picture, look ahead and trust God, then you can balance and make it through."
"Yes! That is so true!"

This isn't exactly a new concept but it hit me extra hard. I know I need to stop focusing on the difficulties right now and look ahead. We left the park with me feeling much more confident about our situation....

BUT....

Funny how those Ah-ha moments can be so fleeting! Because today, at rehab, Shelbie's heart was not doing well! They have two computer screens that monitor everyone on the equipment. You can see the heart rhythms of everyone, right there. There were 9 rhythms up on the screen and I noticed one was out of control. You could hardly call it a rhythm. I went over to the nurse and asked her which one was Shelbie's and she pointed to the one all out of whack! Sheesh! I couldn't believe it.

Not only that, her blood pressure was only 90 over 60 and her saturation was barely above 90. She was weak, tired and lightheaded. In an instant, I could feel my insides wobbling again! It's so frustrating that I have to be so human!

We made it home, but I had to rush off again. I have been working since 7am! It's 11pm and I am still not done working. I came home around 5 just to grab some things for my evening meetings and Sam met me at the door with a little bad news of his own. More bloody stools for him. Good grief! I don't even know what is happening to us! He was bothered but was feeling okay so I just let him go out with his friends and I went to work. I felt horrible but sitting around staring at each other isn't going to accomplish anything.

I kept reminding myself to look farther ahead and not worry about this moment. It kind of works but it takes a ton of energy.

Well, that's a day in the life of me. Still more work to do tonight. When I have to spend so much time at the hospital, it means I have to spend half the night working on my job that actually pays for all those hospital visits...oh and food. I forgot that my kids like to eat occasionally.

Tomorrow, morning, it starts all over again at 6 am...bright and early. I wonder what tomorrow will bring?

Sunday, October 4, 2015

One thing I have learned in my gathering of wholeness, is that the dull chatter that loops in my head is more often than not, the loudest voice I hear.

That is not always, if ever, a good thing.

In my obsession of keeping my head straight, I have a Canon of sorts.

A Canon of goodness that I can turn to when I need to change the soundtrack of what can be a discouraging life.

Below, are some of my favorites from my personal Canon of inspiration.

"If there were a referee to whom I could cry foul, how would I answer if asked: What of the good life you were given? You didn't question being blessed with the wife and family you've loved and enjoyed. You never asked “why” with your good fortune; why do you suddenly find voice to question this event? The truth, of course, is that the good things in our lives are accepted as givens and remain unquestioned. We take notice, and question, only when events hurt or frighten us." David Malham- NY Times Op/Ed on grief"What if our lives were only precious up to a point? What if we held them loosely and understood that there were no guarantees? So, that when you get sick, you weren't in a stage but a process? And cancer was a process, just like having your heart broken or getting a new job or becoming a teacher? What if rather than being cast out and defined by some terminal category, you were defined as someone in the middle of a transformation that could deepen your soul, open your heart and all the while even if and particularly when you were dying, you would be supported by and be a part of a community? And what if each of these things were what we are waiting for?" Eve Ensler"Knowing God consists of many experiences acquired over a lifetime. A slow motion epiphany." Deepak Chopra"Life was never meant to be easy. It has to be hard because Salvation is not a cheap experience. If we are going to be disciples, we have to have something to show for it. We have to have evidence of our devotion to Him. We have to have evidence that we desire to be like Him. Christ chose to retain the wounds in His hands and feet and side so they could be the symbols of His messianic. Everything else about him is perfect. His wounds are evidence that there is sacrifice involved in serving the Lord. They are there to remind us that it takes suffering, heartache, anquish and pain to become like him. There is no other way. Throughout our lives, we have to have times where we cry in our own personal Garden of Gethsemane. We have to have times in our life where we take a step or two towards Calvary. If you are going to be his disciple, how dare you ask, how dare you not even go close to a fraction of the cup he drank. How dare you ask to never go close to the tears He shed and the pain he felt. There is suffering for the Saints!" Jeffrey Holland."Nothing could be more specific than to be told that if you ask, you will receive. The Holy Spirit will answer every specific problem as long as you believe that problems are specific." A course in miracles"What to us is a sad story is God's sanctifying project deserving his closest attention and highest forces. He is a God of lasting miracles. Since hurry could ruin everything, God waits until the project is finished while we wonder at His slow pace. The silence of God is just as important as the still small voice." Wayne Brickey"Be joyful though you have considered all the facts." Wendell Berry

I could go on and on though I'm sure you don't have all day to continue here. This week, we are moving forward with our Cardiology appointment in Salt Lake, provided all the doctor's involved did their assigned part and insurance doesn't change their mind at the last minute. This will be for all three kids. Will we end up scheduling heart surgery for Sam and Shelbie? Can it be fixed at all? Are they candidates for the recoiling procedure to stop some of the holes in their lungs? Does Spencer have pulmonary fibrosis or pulmonary arteriorvenous malformations...or both? More questions than answers.

I usually have an agenda of what I am expecting to happen but the truth is, I'm tired of agendas. I'm tired of hoping and being disappointed and though that may sound like a discouraging sentence, I just really want to let things unfold in God's way. There are times when I am tired of driving this disease. This is one of those times.

Thursday, October 1, 2015

I can be going along, just fine! Totally 'normal'. Every day is just another day in an even stride and rhythm of life. And then, without warning, we trip up and everything is off. This isn't at all how I wanted the last 8 weeks to be.

I knew that Spencer coming home was going to take some adjustment and I knew that there would be tests to catch up on. I didn't know to the extent and extreme that this would affect me. I didn't know that for two years, Spencer didn't really tell me the truth about his health. I didn't know that everything would fall apart so fast.

I saw this quote and in a small way, describes how I am feeling.

With Shelbie and Sam, I see them everyday. I seem them struggle one day but then they have a few good days. Day by day, it seems it all averages out and you don't notice how this disease changes things and dissolves away the healthy stuff in such subtle ways.

For 2 years, I didn't get to see Spencer except the 4 times we were allowed to Skype. When he left, he was in relatively good health. I didn't know any different. When he came home, the toll his mission took and the advances of the disease process were staggering to me. Everything was different all at once instead of one day, melting into the next.

I also didn't realize just how hard it was to send Spencer on a mission. It was a blessing I didn't struggle with his absence while he was gone, but boy, do I feel the weight of what I was asked to do, now. I think this is all contributing my emotional month. So many changes. So much time being strong. So much energy in faith and hope. Now with so many problems to face, it's all just a little too much.

I know that soon, this wave of anxiety will subside and things will get back to the day to day...hardly noticing how the disease is acting but boy, until then, this is not my favorite place to be.

Followers

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14